Depression and Cancer Archives

Beyond Treatment: What Project 528 Reveals About Young Women Living with Advanced Breast Cancer

The hidden burden of diagnosis, the need for holistic care, and Kapa3’s commitment to patient navigation, psychosocial support and empowerment.

A cancer diagnosis at a young age affects far more than physical health. It can disrupt education, employment, family life, personal relationships, financial security and plans for the future. For young women living with advanced breast cancer, these challenges are often particularly complex, as they must navigate treatment and uncertainty while continuing to fulfil multiple personal, professional and family responsibilities.

The findings of Project 528, a global needs assessment led by the Young Survival Coalition (YSC), provide important evidence of these often-overlooked realities.

Presented at the 8th International Consensus Conference for Advanced Breast Cancer (ABC8) in Lisbon in November 2025, the survey gathered 3,881 responses from 67 countries. The findings presented at the conference focused on 385 young respondents under the age of 40 living with advanced breast cancer.

The results highlight significant gaps in access to information, psychological support, financial protection, practical assistance and meaningful participation in healthcare decisions.

Above all, they reinforce an essential message: cancer care must address the whole person, not only the disease.

The revealing findings of Project 528

The survey findings offer a compelling picture of the challenges experienced by young women with advanced breast cancer and demonstrate how deeply the disease affects everyday life.

Motherhood and family responsibilities

Almost half of the respondents (48%) had children under the age of 18.

For young mothers, living with advanced breast cancer means balancing demanding treatment schedules, physical symptoms and emotional uncertainty with the everyday responsibilities of raising children.

Childcare, family routines and concerns about their children’s future can become considerable sources of distress.

These findings highlight the importance of family-centred supportive care that recognises both the needs of patients and those of their loved ones.

Employment disruption and financial toxicity

The socioeconomic consequences of advanced breast cancer are substantial.

64% of respondents reported disruption to their employment following diagnosis, while 40% accumulated medical debt.

According to the detailed Project 528 report, the proportion of respondents who considered themselves financially secure fell from 51% before diagnosis to just 7% during treatment.

These findings illustrate the phenomenon of financial toxicity: the economic burden associated with cancer, including loss of income, treatment-related expenditure, travel costs, caregiving responsibilities and reduced employment opportunities.

Financial insecurity can further intensify emotional distress and create additional barriers to accessing appropriate care.

For younger patients, whose careers and financial independence may still be developing, the consequences can extend well beyond the treatment period.

Psychological distress and quality of life

80% of respondents reported psychological distress or mental health difficulties.

Concerns relating to body image, fertility, sexual health, emotional well-being and loss of independence were widespread, yet were often insufficiently addressed within routine cancer care.

For many young women, advanced breast cancer also raises difficult questions about identity, relationships, intimacy, motherhood and the future.

These challenges demonstrate why psychosocial support should not be viewed as an optional addition to cancer treatment.

It is an essential component of comprehensive, person-centred oncology care.

Delays in seeking care and diagnosis

The survey also revealed important gaps in awareness and early detection.

40% of respondents reported delaying their initial medical consultation. Contributing factors included fear, limited awareness of symptoms and experiences of having their concerns dismissed or underestimated by healthcare professionals.

Only 14% reported being diagnosed through screening or routine medical care, while 85% sought diagnosis after identifying symptoms themselves.

These findings point to the need for greater awareness of breast cancer in younger populations, timely clinical assessment of concerning symptoms and improved communication between patients and healthcare professionals.

They also remind us that young age should not automatically lead to the dismissal of potentially significant symptoms.

Gaps in information and access to precision medicine

The findings also identified differences in access to diagnostic testing and understanding of treatment options.

Although 90% reported undergoing genetic testing for inherited mutations, only 59% had received genomic or companion diagnostic testing to investigate characteristics of the tumour.

Such testing, when clinically indicated, can provide valuable information to support personalised treatment decisions.

Moreover, only 46% of respondents reported being offered more than one treatment option, while targeted therapies were among the least understood treatment approaches.

These results highlight the importance of accessible medical information, effective patient–professional communication and shared decision-making.

Online patient communities also emerged as valuable sources of information, peer support and empowerment. However, the detailed Project 528 report found that 43% had not been referred to peer-support or patient advocacy groups by their healthcare teams.

As Jennifer Merschdorf, Chief Executive Officer of the Young Survival Coalition, emphasised, healthcare systems too often place the burden of self-advocacy on patients who are already coping with fatigue, fear and financial strain.

The Kapa3 connection: From identifying needs to meaningful action

The findings of Project 528 are more than statistics. They reveal the personal, social and economic dimensions of cancer that healthcare systems must increasingly recognise and address.

Although the survey reflects experiences reported across different countries and healthcare contexts, many of the challenges it identifies are also relevant to the needs that cancer patients and families may encounter in Greece.

At Kapa3 – Cancer Guidance Center, we believe that the experience of cancer extends far beyond hospital appointments, medical consultations and treatment decisions.

Cancer affects the ability to work, care for loved ones, maintain financial stability, access essential services and participate fully in everyday life.

Our mission is to help bridge the gap between medical care and the practical, social and emotional needs that accompany a cancer diagnosis.

Patient navigation and guidance within healthcare and social support systems

As Professor Fatima Cardoso, President of the ABC Global Alliance, has highlighted, equitable access to appropriate diagnostics, personalised treatment and comprehensive supportive care is essential.

At Kapa3, we provide free patient navigation and social guidance services, helping people affected by cancer and their families better understand their rights and access available forms of support.

Our work includes guidance on administrative procedures, disability assessment and certification, social benefits, insurance-related matters, workplace rights and available community resources.

Through individualised support and cooperation with relevant services, we aim to reduce the bureaucratic and informational barriers that patients frequently encounter.

No person affected by cancer should have to navigate a complex health and welfare system alone.

Psychosocial support and quality of life

With psychological distress affecting such a high proportion of young patients in the Project 528 survey, emotional and psychosocial care must be recognised as a central part of the cancer journey.

Kapa3 provides psychological support services adapted to the needs of patients and caregivers, alongside social guidance and referrals to appropriate specialised services when necessary.

We recognise the importance of offering a supportive environment where people can discuss emotional uncertainty, changes in family and personal relationships, body image concerns, fear of recurrence or progression, and the challenges of adapting to life with cancer.

Our approach promotes dignity, emotional resilience and a more comprehensive understanding of quality of life.

Practical assistance and support for families

For a young mother living with advanced breast cancer, routine tasks can become overwhelming.

Childcare arrangements, travel for treatment, household responsibilities, employment obligations and financial pressures may all create additional burdens.

Kapa3 supports patients and caregivers by identifying their practical needs, providing information and connecting them with appropriate social services, community resources and support structures.

Through collaboration with local authorities, healthcare professionals and community organisations, we seek to strengthen continuity of support and help families navigate everyday challenges.

Empowerment, health literacy and patient advocacy

One of the strongest messages emerging from Project 528 is that reliable information is a fundamental resource for patient empowerment.

At Kapa3, we work to strengthen health literacy, informed participation and patient advocacy.

We encourage patients to ask questions, understand the information provided by their healthcare teams, become aware of relevant diagnostic and treatment options, and participate actively in decisions affecting their lives.

Our role is not to replace medical advice, but to help people access trustworthy information and feel better prepared to communicate with healthcare professionals.

At the same time, we advocate for more inclusive health and social policies that recognise the particular challenges experienced by adolescents and young adults affected by cancer (AYAs).

These include employment protection, financial security, psychosocial needs, family responsibilities, fertility-related concerns and continuity of care.

Moving forward together: Advocating for a better quality of life

Project 528 offers an important roadmap for researchers, healthcare professionals, patient organisations and policymakers.

It demonstrates the urgent need for healthcare systems that are not only medically effective, but also accessible, coordinated, compassionate and responsive to the realities of people’s lives.

The findings should be interpreted in the context of the survey’s limitations, including its reliance on self-reported experiences and uneven geographical representation. Nevertheless, they provide valuable patient-reported evidence that can inform further research and improvements in supportive care.

Behind every diagnosis is a woman who wants to continue living, loving, working, raising her children, building relationships and making plans for the future.

As Christina Thammasen, who shared her experience of living with metastatic breast cancer, reminds us:

“You have to keep fighting, you have to keep moving forward, you have to keep living your life.”

At Kapa3, we remain committed to ensuring that no woman, no young adult and no family affected by cancer has to face these challenges without information, guidance or support.

We advocate for a model of holistic, person-centred cancer care that extends beyond treatment and recognises every dimension of human life.

Because cancer care is not only about treatment. It is about protecting dignity, supporting everyday life and ensuring that no one is left behind.

Need support?

If you are a young person affected by cancer, a patient or a caregiver seeking guidance, psychological support or information about your rights, the Kapa3 team is here to help.

Kapa3 – Cancer Guidance Center

Telephone: +30 210 5221424
Email: info@kapa3.gr
Website: www.kapa3.gr

Sources and further reading

Young Survival Coalition. Project 528 – First Look ABC Data: Global Needs Assessment of Young Adults Affected by Advanced Breast Cancer (2025).
https://project528.youngsurvival.org/wp-content/uploads/2025/11/MBC-Report-Project528_11.2025.pdf
ABC Global Alliance / ecancer. First global survey highlights challenges faced by young women with advanced breast cancer. 6 November 2025.
https://ecancer.org/en/news/27226-first-global-survey-highlights-challenges-faced-by-young-women-with-advanced-breast-cancer
Oncology Central. ABC8: Global survey highlights challenges that young breast cancer patients face. 6 November 2025.
https://www.oncology-central.com/abc8-global-survey-highlights-challenges-that-young-breast-cancer-patients-face/
Project 528 – Official website and research findings.
https://project528.youngsurvival.org/results/

Article edited by:
Elena Panopoulou, Sociologist, Kapa3 Tripoli Team
Email: elenak3team@gmail.com
LinkedIn: Elena Panopoulou

Evangeli Bista Joins the PATH Expert Group as an Independent Expert: Bringing the Patient Perspective into the New Era of AI in Cancer Care

A new contribution to the European dialogue on safe, responsible and human-centred Artificial Intelligence in healthcare

Evangeli Bista, Co-founder and Head of Operations and Development of Kapa3 – Cancer Guidance Centre, has been invited to join the Expert Group of the European research and innovation project PATH – Patient AI Treatment Hub as an independent expert.

Her participation is undertaken in a personal and independent capacity, with her professional affiliation to Kapa3 – Cancer Guidance Centre, creating an opportunity to bring into the European dialogue experience gained through direct engagement with people affected by cancer, survivors, caregivers and healthcare professionals. The PATH Terms explicitly define Expert Group members as acting independently rather than as partners, employees, agents or subcontractors of the Consortium.

What is PATH – Patient AI Treatment Hub?

PATH – Patient AI Treatment Hub is a European research and innovation project focused on supporting the safe and effective integration of Artificial Intelligence into cancer care through the development of a secure, interoperable and privacy-preserving digital platform.

The project aims to explore how Artificial Intelligence tools can be safely integrated into cancer-care pathways, supporting healthcare professionals and contributing to more personalised approaches while safeguarding privacy and health data.

At the heart of this effort lies a critical question:

How can technological innovation create meaningful value for patients while preserving trust, human oversight, safety and equity?

Participation in the PATH Expert Group

As a member of the PATH Expert Group, Evangeli Bista will contribute independent expertise, opinions, input, comments and feedback in relation to selected project use cases and activities.

The experience developed through Kapa3’s work can contribute to discussions around issues such as:

patient-centred cancer care,
patient navigation across health and social-care systems,
equitable access to information and services,
health and digital literacy,
health and social rights,
responsible use and protection of health data,
transparency and human oversight in Artificial Intelligence systems,
meaningful involvement of patients and civil society in technology design,
and translating technological innovation into real value for people.

Why the Patient Voice Must Be Part of Innovation

Artificial Intelligence is creating new possibilities for healthcare and cancer care. At the same time, its growing use raises important questions concerning trust, transparency, safety, equitable access and human oversight.

For Kapa3, the development of a digital solution cannot begin solely with the question of what is technologically possible.

It must also ask:

What does the patient actually need?

Can people understand the information they receive?

Do they know where that information comes from?

Can they trust the system?

Is it clear when Artificial Intelligence is being used and when human professional judgement is required?

Could digital inequalities lead to new inequalities in healthcare?

And ultimately, does innovation genuinely improve the experience and pathway of a person facing cancer?

These are questions that we believe should remain at the centre of the European discussion on Artificial Intelligence in healthcare.

Kapa3’s experience in digital health

Evangeli Bista’s participation in the PATH Expert Group comes at a time when Kapa3 is systematically expanding its work in digital health, patient navigation and the responsible use of emerging technologies to support people affected by cancer.

This broader work also includes MYRTO – Digital Navigator for Health and Social Rights, an independent Kapa3 initiative developed to help transform complex and often fragmented information on rights, benefits and administrative procedures into more accessible, structured and evidence-based guidance for patients and caregivers.

MYRTO is not part of PATH, and the two initiatives are independent from one another.

However, the experience of developing patient-facing digital services has reinforced several principles that Kapa3 considers essential:

reliable information, transparent sources, understandable communication, data protection, human oversight and a clear pathway to professional support when technology alone is not enough.

This distinction is also important from an intellectual-property perspective, since the PATH Terms preserve intellectual property that exists independently of the Expert’s Services and is not incorporated into PATH Contributions.

From information to trust

Digital transformation in healthcare is not simply about more data, more algorithms or more applications.

It is about creating greater understanding, better access and stronger trust.

For a person facing cancer, information has value when it can be translated into a meaningful next step.

Technology has value when it reduces — rather than increases — complexity.

And Artificial Intelligence has value when it strengthens, rather than replaces, human care, professional judgement and the patient’s ability to participate meaningfully in decisions affecting their life and health.

A new opportunity to contribute to the European dialogue

For Kapa3, the invitation to Evangeli Bista to participate as an independent expert in the PATH Expert Group represents an important opportunity to bring into the European dialogue experience, needs and concerns emerging from the real-world context of cancer care and patient support.

The objective remains clear:

Artificial Intelligence in healthcare should advance with safety, transparency, responsibility, equitable access and meaningful involvement of the people it is designed to serve.

Because innovation creates real value when it is designed with people and for people.

PATH – Patient AI Treatment Hub | At a glance

Field: Artificial Intelligence and data in cancer care
Project: PATH – Patient AI Treatment Hub
Focus: Safe and effective integration of AI into cancer care through secure, interoperable and privacy-preserving approaches.
Expert Group: Independent external experts providing expertise, opinions, input, comments and feedback to the Project.
Independent Expert: Evangeli Bista
Professional role: Co-founder & Head of Operations and Development
Affiliation: Kapa3 – Cancer Guidance Centre

Depression and Cancer Mortality: A Critical Link Across Major Cancer Types

Depression is a common but often underrecognized condition among cancer patients, affecting up to 20–30% of individuals diagnosed with the disease. Beyond its impact on quality of life, mounting evidence suggests that depression can significantly influence cancer outcomes, including survival. A recent meta-analysis of 65 cohort studies spanning colorectal, breast, lung, prostate, and mixed cancers provides compelling evidence that depression diagnosed after a cancer diagnosis is associated with a substantially increased risk of mortality.

The analysis revealed that patients with depression faced an 83% higher risk of dying from colorectal cancer, a 59% higher risk in lung cancer, a 74% higher risk in prostate cancer, and a 23% higher risk in breast cancer compared to non-depressed patients. Across mixed cancer types, depression increased the risk of cancer mortality by 38%. These findings underscore that the psychological burden of cancer is not merely an emotional challenge but a critical factor affecting survival outcomes.

Mechanisms Linking Depression and Cancer Outcomes

Depression may influence cancer progression through multiple biological and behavioral pathways. Biologically, depression is associated with chronic systemic inflammation, dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, immune suppression, autonomic dysfunction, oxidative stress, and impaired DNA repair. Elevated pro-inflammatory cytokines, including interleukin-6 (IL-6) and tumor necrosis factor-alpha (TNF-α), can contribute to tumor growth and metastasis. In older patients, depression may exacerbate age-related immune dysfunction, creating an environment more permissive to cancer progression.

Behaviorally, depression affects health-related actions and treatment adherence. Depressed patients are more likely to delay seeking medical care, adhere poorly to chemotherapy, radiotherapy, and hormonal therapies, and engage in unhealthy habits such as smoking, poor nutrition, and physical inactivity. Social isolation and reduced support systems further increase vulnerability, compounding the negative impact on survival.

Clinical Implications and Interventions

The strong association between depression and cancer mortality highlights the urgent need to integrate mental health care into routine oncology practice. Psychological interventions, such as cognitive-behavioral therapy (CBT), supportive-expressive therapy, and mindfulness-based approaches, have shown promise in reducing distress and improving adherence to cancer treatment. Pharmacological management, including selective serotonin reuptake inhibitors (SSRIs), may also support mental health and potentially influence cancer outcomes, though more research is needed to understand their role fully. Early identification and treatment of depressive symptoms should be considered a priority for oncologists, mental health professionals, and healthcare policymakers alike.

Limitations and Future Directions

While this meta-analysis provides robust evidence, several limitations should be noted. The observational nature of the studies prevents establishing causality, and differences in study design, depression assessment methods, and patient populations contribute to heterogeneity. Future research should explore longitudinal and randomized studies to clarify causal pathways and identify the most effective interventions to reduce depression-related mortality. Investigating the interactions between depression, inflammation, and cancer biology may also reveal targets for novel supportive therapies.

Depression is not just a psychological burden for cancer patients—it is a significant predictor of mortality across multiple cancer types. These findings call for systematic depression screening and tailored interventions as integral components of oncology care.

Organizations like Kapa3 play a vital role in supporting the mental health of cancer patients, offering resources and guidance that can improve both quality of life and treatment outcomes. Integrating psychological support into cancer care ensures that mental well-being is recognized as an essential part of the healing process.
In line with this mission, Kapa3 participates in MELODIC, a new European initiative dedicated to supporting the mental health of young adults (18–30 years old) living with or beyond cancer.

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